A concerned & worried father

[karbhari]

Hi

At birth my daughter Kannika had some complications due to which she has 2 scars (gliosis) in her brain. For first 3.5 years she was seizure free and then she started getting these attacks.

After she was 3.5 years old she had an epileptic episode about once in a year and then the last 2 years she was without any seizures (that is till she became 8 years old ).

Now she is 8 years old and unfortunately she has had epileptic episodes every month for the last 3 months (july , Aug Sep) .. the last being yesterday. We really dont know what has brought this drastic change. Her growth milestones are fine and the doctor has termed her seizures as complex partial seizures.

In july 2009 when she had her epileptic attack after 2 years of being seizure free the doctors increased her tegrital (Carbamazepine) from 450 mg / day to 600 mg/day

However in aug 2009 she got another attack and the doctors started the process of changing her medication from tegrital to oliptal (Oxcarbazepine) . The process was to decrease the tegrital and increase the oliptal in a phase wise manner

She had another episode yesterday and she is now on 900 mg/day of oliptal and 100 mg/day of tegrital. They are intending to stop the tegrital completely next week.....

I am at a loss as to why there has been a sudden spurt in her seizures and wish to educate myself a little more about this symtom, its causes, AEDs etc..

Karbhari

 

[Nakamova]

Hi karbhari, welcome to the site --

If there are underlying scars in your daughter's brain, this can mean a generally lowered seizure threshold. Your daughter may be more vulnerable to various seizure triggers, and as a growing child there are many things changing in her life fairly rapidly -- metabolism, activity, sleep etc. that can affect her brain chemistry. Sometimes the medication that used to work is no longer is as effective. And changing meds can also be a tricky time when more seizures might occur.

There are many people on this site with children with epilepsy who will have information and advice for you. Some have found that diet is an especially powerful way to control and possibly eliminate seizures. I recommend you search and ask questions. This site is a terrific resource for information and support.

Best,
Nakamova

 

[Loudmouth]

Has she gone through a recent growth spurt, or put on weight recently, as both these things can affect the levels of AED's that are needed. I use a gluten-free diet for my 11 yr old daughter and also have eliminated artificial sweeteners from her diet to try to control her seizures without medication. She is doing well, but even then, she has an increase in her seizures each time she has a growth spurt. (I also have Epilepsy myself).

 

[epileric]

Welcome to CWE

What kind of tegretol is your daughter on? Is it XR (or CR in Canada). That's the time released tegretol. If not, it might be that her levels drop at a certain time of day making a seizure more likely.

 

[RobinN]

There is also hope that at a little bit older age, that Neurofeedback would help her growing brain to stabilize. It certainly has been a part of my daughters healing.

Welcome to CWE.
You might also consider looking at some of the other alternatives that we post here. Nutrition has raised my daughters seizure threshold quite a bit. Eliminating foods that she is sensitive to, and keeping the food that she does eat free of additives, and processed foods has been helpful

 

[Meetz1064]

Another thought

What has she been doing at the time that the seizures have occurred? Has she been playing video games/watching TV/working on the computer? It's important to track this, as it will help track what the possible triggers are....

 

[skillefer]

Any chance she's going through puberty? some women find that hormone shifts can trigger their seizures. Yes, she's young. But that doesn't mean that her body isn't already shifting hormones.

 

[karbhari]

Thank you ...

Hello All

Thank you for all the feedback.... will do some more analysis and reading ..

It just breaks my heart seeing her go thru a seizure otherwise she is such a positive & happy girl... (perhaps I need to learn from her )

The site seems really good, lots & lots to read/refer/share

Keep the faith

Karbhari

 

[RobinN]

I agree.... it is very hard to watch a child go through this.
My daughters personality almost changed over night. The meds played a huge part in that. Once her body was cleared of the meds she was happier, walked with a skip to her step again. However, wiser to how life makes sudden twists and turns, and knowing how much we take our health for granted.

I have definitely learned from the experience.